Illness perceptions, psychological well-being, and unmet needs among Indian parents of children with neurological illnesses

Abstract

Background: This study examined the relationship between illness perceptions, psychological well-being and unmet needs among parents of children with a neurological illness. Methods: Using purposive sampling, and after obtaining informed consent, 205 participants (mother/father) were administered questionnaires on illness perceptions (Brief Illness Perception Questionnaire; Broadbent et al., 2006), psychological distress (Hospital Anxiety and Depression Scale; Zigmund & Snaith, 1983), coping (Coping Inventory for Parents; McCubin et al., 1983), and unmet needs (Unmet Needs in Families with Children with Disabilities; Thyen et al., 2003). The variables were analysed using correlation and multivariate analysis of variance. Findings: Bivariate analyses indicated that among the demographic variables only parents’ education significantly correlated with their unmet medical and physician’s care coordination and communication needs (r = -.23, p<.01 & r = -.26, p<.01 respectively) and negative illness perceptions (r = .27, p<.01). MANOVAs were conducted with two demographic variables (i.e., educated vs. uneducated) as independent variables, and with the three psychological variables (illness perceptions, coping, unmet need) as dependent variables. Significant associations were examined further by non-parametric testing (Kruskal-Wallis). Findings revealed significant association between the psychological variables and parents’ education (F (9,194) = 4.062, p<.05). Discussion: The study findings indicated that uneducated parents were more likely to experience unmet medical and physician care and communication needs, use unhelpful coping strategies, and to perceive their child’s illness as threatening. These findings emphasize the need to provide additional psychological and information support regarding paediatric neurological illnesses to parents who are not educated.